Dr. Mostashari’s tweet is directionally correct, but isn’t it time to be more specific about the type of health data “people want?” We can’t really make assumptions about the demand for a bridge (let alone type) without a clear definition of the body of water we’re trying to navigate. If it’s an ocean ‒ or a swimming pool ‒ the demand for a bridge wouldn’t exist and (to extend his analogy) any meaningful data dialog is lost.

In fact, the mental model of “health data” is about as wrong as the mental model of “consumers” in healthcare.

Over the past decade, an image of the “ideal” healthcare consumer has emerged. Armed with personal health data, ratings and rankings, and driven by financial skin in the game, the ideal healthcare consumer makes the healthcare system better by forcing healthcare providers to compete for her business. All of this is great ‒ except for the fact that the current mental model of the healthcare consumer is, well, wrong.Consumer-oriented thinking in healthcare often blindly applies insights from other consumer sectors ‒ assuming that patients will apply the same approach to purchasing an Ikea futon or Toyota Prius to making healthcare decisions. While this mental model has gained a lot of traction, important aspects of health-specific consumer behavior are conspicuously absent from the dialogue. ‒ Sachin Jain, MD. Getting Consumerism Right In Healthcare

That’s not entirely coincidental and like the healthcare consumer, the mental model of consumable “health data” lacks a useful definition.

So just what is the “health data” that “people want?” It’s a safe bet that it’s not the digital exhaust from those expensive billing engines in wide use. We all know this “data” because it has all the stench of perforated, green bar paper used by most enterprise accounting departments. It’s an odor of cable or wireless billing. There’s some color and the all important logo, but any value after that is hard to decipher.

Yes ‒ it’s the infamous Explanation of Benefits ‒ or EOB. This particular one screams of billing codes and claims processing with it’s opening sentence. The message this data sends (often arriving by USPS) is crystal clear. We’ve done a data dump of the opaque billing math associated with your visit and here it is. It’s not a bill, of course, because it can’t be. It’s all math ‒ no accounting.

This BCBSMA version has been updated with a bar code along the left edge because, of course, every household has a bar‒code reader for processing mail. This “health data” isn’t just annoying, it has the same negative effect as that other ubiquitous paper form that we’re all instructed to fill out ‒ by hand ‒ the “Patient Information Form.” It’s the one-two punch in healthcare’s opening salvo of the data dialog. We need all your patient information on this paper form and in exchange ‒ we’ll send you a non‒bill.

In fact, we could save a ton of dead trees AND postage if we gave patients an opt‒out choice from the EOB. With that option, any legal obligation should be satisfied and the hospital (or practice) has communicated something far more valuable to all of us as patients ‒ acknowledgment of a personal choice. It’s an early appeal to an actual dialog.

All of which reminded me of Dave deBronkart’s clarion call from a stage in Toronto Canada just over 6 years ago.

When Dave made this provocative demand, there was so little data being shared that it was bold to demand any of it. I’d like to think we’ve made some progress since September of 2009. But have we?

In the spirit of any progress at all, I’d propose a new demand. Don’t Gimme Just Damn Data

So, beyond the demand for data using paper forms and the digital exhaust of the EOB, what data do patients really want? I can’t speak for all, of course, but here’s a few thoughts.

Appointment confirmations and reminders. Sure ‒ and these are important, but they’re not really “data” as much as tokens. Certainly if I’ve booked an appointment, it should be easy to return a confirming calendar request in a format that populates a digital calendar. This isn’t really health “data,” it’s a digital notification (even if it’s protected by HIPAA as PHI).

Lab results and images. Thankfully, newer services like Theranos do this today and it’s a great example of just how engaging health data can be. The results of the blood tests I bought recently (entirely ad-hoc) were delivered by email as an encrypted PDF in less than 28 hours. The PDF was password protected, well designed, and actionable because I could easily research (or share) the results. Someday all tests will mirror this thoughtful and effective design ‒ including tests that are expensive and require an order or Rx. Absent an online and shareable repository for the data ‒ PDF is effective, simple and it can also be printed and mailed if that’s a preference. A well designed (and secure) PDF is a great start and doesn’t require waiting for the oceans of vendor “interoperability” to be boiled through a patient portal.

Device data. This one’s a biggie and reminds me of Hugo Campos. He has an implantable cardiac defibrillator (ICD) manufactured by the med device behemoth Medtronic. The company has this antiquated notion (largely around IP protection and legal liability) that the data Hugo’s ICD generates ‒ literally his beating heart ‒ should only be accessible by Hugo’s cardiologist. This is patently absurd and needs to change quickly if clinicians want to establish the level of trust necessary for engaged patients around coordinated care.

The absurdity of this thinking isn’t exclusive to the manufacturer either. It extends right into the clinical community. The idea of proprietary medical device data locked away from patient view may not be supported by clinicians, but far too many are silent on the abhorrent (albeit perfectly legal) business practice. Patients need clinicians who reject this antiquated thinking aggressively and publicly on our behalf. If a clinician prescribes a digital device (any kind), shouldn’t they also have an obligation to advocate directly for patient access to the data the device generates? Just asking.

Clinical and SOAP or Admission Notes. Like med device data, this is at the heart of the digital health dialog and friction ‒ because it’s the clinical insight that all patients need for their own journey ‒ at each and every step. The SOAP format (Subjective, Objective, Assessment and Plan) could easily be redesigned for PDF presentation.

Today, there’s a palpable resistance on the part of many providers to share this critical data. A recent poll on Sermo (the private messaging service for clinicians) suggests that an overwhelming majority of providers (66%) are reluctant to share their clinical notes. As the originators and authors of the data, I understand the legal right of ownership, but they also have a corresponding legal obligation to make the data accessible to patients in both a secure and timely fashion. That’s just the legal obligation. In this context ‒ don’t they have a moral one as well? Again, just asking.

There’s more, of course, but this is a good start relative to establishing the kind of dialog that’s focused on clinical care and not just the fee-for-service billable care. As the Theranos consumer model demonstrates, none of this is dependent on “interoperability,” EHR software or patient “portals.” Any health entity can deliver a secure PDF in a timely fashion ‒ even if it’s just printed and sent by USPS. The only real criteria is that they have to want to do that. How much longer before that happens? Again, just asking.

Dan is author of the book "Casino Healthcare: The Health of a Nation, America's Biggest Gamble," and currently a Contributor at Forbes where he has been writing for the Pharma & Healthcare channel since 2011. Dan has also authored articles for global brands like TEDMED, Re/Code, Cisco and for healthcare publications like Health Standards, The Health Care Blog – and others.

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